Leslie was 31 when she was diagnosed with breast cancer, working as an administrator at a university in London, and found herself pondering questions she never imagined having to face.
It was the week before my 31st birthday and I noticed a lump on my breast. I had seen something on the internet that suggested your breasts could get lumpy during your period, so I waited a week for my hormones to settle again. And I had just seen the doctor due to fatigue and had a bunch of blood tests done that came back clear, so I tried not to think about it. But, two weeks later, when the lump was still there, I made an appointment at the breast clinic to get it checked out.
The examining doctor thought it might be a cyst, maybe even an infection because it was hot, but scheduled me for a biopsy just to be sure. No one said anything about the possibility of cancer, so I didn’t worry about it. In fact, I was quite confident that it would be a benign cyst. Then, two weeks later, when I went to get the results, the breast consultant started asking me a bunch of questions that didn’t make sense to me.
He started out by asking me if I was on my own, which I was, and that got me very worried. Then he asked, “Do you have any children?” No. “Do you want children?” I don’t know, I haven’t really decided, probably not, but I don’t know. The whole conversation was surreal. And that’s when he said, “Oh, because we have found that you’ve got cancer.”
Chicken or Egg Questions
At the time, I didn’t understand this connection between cancer and children. And that was an odd way to be told that I did, in fact, have cancer. I just found that so maddening—to be in a room and have to decide, when I’m single, do I want children. I really didn’t know whether or not I wanted kids. It wasn’t a driving passion in my life.
What he was really asking was did I want to do any fertility preservation or egg harvesting before starting chemo, but came about it in such a backwards way. I was so frustrated that I had to decide on a future plan that I hadn’t really thought about, without a partner with whom I might want to have children. That was particularly difficult at the same time I was digesting the news that I had cancer and would need chemo. It was a lot, and he really didn’t seem to understand my priorities. But if there was any chance that dealing with my fertility was going to interfere with treatment, then I wasn’t going to do it. I wasn’t even sure I wanted children, or that they would need to be mine biologically, so I certainly wasn’t going to risk letting the cancer spread.
I got my diagnosis on Thursday, and was at the fertility clinic on the following Tuesday to learn about my options. Ultimately, I decided not to freeze my eggs—one of the options they presented—because it was going to have to be very quick. They would have just been able to do one round of harvesting before I had to start chemo, which was not likely to be effective. Instead, I opted to have hormone injections to suppress my ovaries, which should help protect them during chemo.
Taking One for the Team
Usually with my type of cancer they would do surgery first and then chemo, but my lump grew quite quickly and was rather large by the time I got to see the oncologist, so in order to avoid a mastectomy, they planned to do chemo first, followed by surgery and radiation. It was quite the whirlwind of activity. On the one hand, it is comforting that it happens so fast, but it doesn’t give you much time to take things in and process them. By the time you get to your next appointment, there is something new you have to deal with.
Even though it was a shock when they told me I had cancer, I think a part of me always knew that I would get cancer at some point. It was quite morbid, but given the statistics you hear, and the fact that my dad’s sister died of breast cancer at my age, it seemed like something I should expect. And I would rather take one for the team—be the one to have it than to be going into an appointment with someone I loved who had it. Still, I worried about how to tell my dad because I didn’t want him to equate my diagnosis with his sister’s death.
The Waiting Game
Finding out that I had cancer was sort of like an out of body experience. I couldn’t believe the doctor was talking about me. It felt as if they were talking about someone else, that this was not affecting me now. But then it came in as sort of a crash later. The idea of having cancer didn’t make me cry, but when the doctor said I was going to have chemo, and that I would have it first, that’s when I became afraid. I never thought that I was going to die, but I did think it would be inconvenient, that I would have to put my plans on hold. I had finally submitted my application to become a teacher, something I had always wanted to do, but now that would have to wait.
They scheduled me for four rounds of a combo chemo on a three-week cycle, followed by four rounds of just Taxol, and told me that the chemo would cause me to lose my hair. The hormones to suppress my ovaries would also cause my hair to thin, so I’ve got a combination of issues. I started using a cold cap in the hope of preserving some of my hair. So far, I’ve lost a bit but really can’t complain. Unfortunately, it’s the Taxol that causes most people to lose their hair, and I haven’t started that one yet.
Normally, I am an information gatherer, but I’ve never had a folder thrust at me like the one I received with my diagnosis. I’ve been quite reluctant to read too much of it. In my mind, it doesn’t change much of what is going to happen, so what is the use of reading more? I’ve read more about hair than anything else about my treatment. It seems that it comes back all different—curlier, courser, all different. Time will tell.
I did ask them how long until I have my surgery. I want to be able to plan things for the summer, but they couldn’t give me a specific date. Maybe 4-6 weeks after the chemo is done.
In the meantime, I am working from home part of the time, in the office when I feel up to it. My department has been very supportive and flexible, allowing me to do what’s best for me. Work is a big thing for me. It’s a routine and a chance to be with other people, have other priorities and things to think about. It helps keep me sane to carry on as normally as possible.
So far, treatment seems manageable. I’m tired and achy from the bone marrow injections I have to give myself, but other than that and a little constipation, really feeling okay physically. Knowing that the tumor shrank from 7 mm to 4 mm after the first infusion makes the treatment a little easier to bear. But I find the inability to plan anything so frustrating. And sometimes I feel a little low—not depressed, just a little low. And I think it’s okay to allow myself that. I don’t have a problem with telling people how I feel, so if it becomes depression, it won’t be a secret.
Nagging Little Voice
I am definitely feeling chemo brain already. I read an article about chemo brain and mentioned it to my oncologist. He asked if I had any questions. I said I had three questions, but then couldn’t remember the questions! The oncologist said “Oh, that’s because of the chemo.” He told me it would get worse as I had more chemo, but that it was a temporary condition. That was reassuring, but it is so frustrating to have to tell people to repeat things. Sometimes, in conversation, I get lost and can’t even figure out where the conversation started. It’s particularly frustrating at work where I manage other people. I am used to being sharp and picking up new things quickly, but not anymore. I know it’s not me, that it belongs to the cancer, but it’s slowing me down and I find it challenging to cope with that.
Sometimes I find myself thinking about my mortality a bit more. Not that I think that I will die from this cancer, but it does sort of creep into the back of my mind a little. When I tell people about my diagnosis, I am always telling them that I am going to be alright, and I believe that. But a little bit of me worries that the cancer I have now might lead to a reoccurrence that might lead to something else later. But that’s just a very minor voice in the back of my head. When they were doing some testing in the beginning and thought maybe it had spread, that was more worrisome, but now that they are certain that it is contained, it feels manageable.
Knowing and Telling
One of the hard things about cancer is that there is this time between finding the lump and actually knowing what is going on. I couldn’t help thinking about it each day, but just kept telling myself not to focus on it, that nothing I could do would change the results. At the time, I hadn’t told anyone yet, and never felt the urge to mention to anyone that I had found a lump. It was unusual for me not to mention it, but I thought it would be alarmist if it turned out to be nothing. I didn’t like not telling people, but put it out of my mind. I particularly worried about telling with my dad. It would have been unfair to alarm him if it turned out to be nothing and I didn’t need to tell him after all. So, I just kept it to myself.
The other thing that was so hard was the not knowing, the waiting for results. The night before I would learn the results from the imaging about whether or not my cancer had spread, that was hard. It was playing on my mind more than waiting to get the original diagnosis. I’m just such a practical person. I knew that once there was a plan I would feel more in control. You’re basically in limbo while you wait to find out what is going on. Once things start, you feel a little better. They wanted me to start chemo before Christmas, which was upsetting because I wanted to be able to enjoy the holiday, but then because I hadn’t started the hormone injections yet, it got postponed by a week, which almost felt worse. After all the waiting, you are desperate to get started.
At no point have my doctors mentioned survival rates or anything like that. I think that is quite unusual, but I take it as comforting. They told me when I was diagnosed that 75% of breast cancer is this kind of cancer. “You’re nothing special.” There is something very reassuring about this. It’s the run of the mill sort of thing that happens to people every day.
My doctor gave me good advice. He told me not to worry about other people, rather to just focus on myself. But there is something quite reassuring about knowing that someone else might be feeling the same thing, that it’s not unusual or wrong. Yet in a support group where everyone is complaining, you don’t want to take on someone else’s issues. You don’t want to feel compelled to feel her fear or frustration when you have only just learned to deal with your own. So, I do try to focus on myself. But others worry about you and what you are going through. They are thinking about how you might be feeling while you are wondering how they’re feeling. It gets complicated.
I will always be slightly cynical, but I believe you benefit from going through any traumatic experience. It will make me stronger, maybe a little more hardened than I would like to be, but maybe also more equipped to deal with other things in the future. I wonder sometimes, how would others have coped? I’m glad that it’s me because I feel like I can do it. Maybe at some point I will crash and burn, but mostly I think like it’s a crappy situation but it’s doable.